Greetings! I hope you had a wonderful holiday weekend full of lots of love, laughter and good time with family and friends. Here in the Midwest, we had cool temperatures on Friday and Saturday but we’re back to heat and humidity today. I love the 4th of July weekend. Usually, it means good barbecue, spending…
Conference – Where You Can Always Come Home to Your NFED Family
This year’s Family Conference is a Homecoming, meaning a place where you can come home to your NFED family. You will find people who will welcome you with open arms. You can rekindle friendships made long ago. You’ll remember the fun had at previous Conferences and make new memories. Home is the soft place you…
Why You Should Care About the XLHED Research Study
By Mary K. Richter NFED Founder People often ask me what I think of the research underway using a protein replacement to minimize the effects of hypohidrotic ectodermal dysplasia. At this point in my life, I realize that my response would change dependent upon the stage of life in which I or my son was….
Homecoming
If you’ve ever been away from home and your loved ones for a while, you know how good it feels to return. Whether it’s been a month or a year, the sense of familiarity remains and it feels like no time has passed at all. Attending the annual NFED Family Conference is like that. Even if it’s…
Free Genetic Counseling Services for Families Affected by HED or XLHED
Learn More on Live Chat – Thursday, May 29 on Our Facebook Page – 6:30 – 7:30 p.m. Central Time Dear NFED Families, Edimer Pharmaceuticals has teamed up with Informed DNA to provide free genetic counseling services to families who have or suspect to have hypohidrotic ectodermal dysplasia (HED) or x-linked hypohidrotic ectodermal dysplasia (XLHED). Informed DNA…
An Open Letter to Mr. Shaquille Neal
April 28, 2014 Dear Mr. O’Neal, All of us at the National Foundation for Ectodermal Dysplasias (NFED) are terribly disappointed by the hurtful image that you and others recently posted on social media about a member of our family, Jahmel Binion, who is affected by ectodermal dysplasia. Individuals affected by these rare, genetic conditions often…
94 Years and Going Strong
I just called a friend to wish him a happy birthday. With a chuckle, he greeted me with the question, “How did you know I was still alive?!” I told him that with a spirit as big as his, I just knew he was alive and doing well. And he is. That’s our Joe Barone….
Welcome to the NFED Family Liaison Blog!
by Heather McKelvie The liaisons are taking over the blog! We’re planning to use the blog to raise awareness of ectodermal dysplasias and to share our stories and experiences in a place where you can easily search and find topics that are important to you. We intend to promote NFED events (especially the Family Conference),…